Friday, January 28, 2011

Post Op

Sully's big day

I took this pic in the wee hours of this morning...Sully did really well in surgery today. All of his organs were up in his chest and now have been moved down to their proper place. He has a patch filling part of the hole.

Thursday, January 27, 2011

wild ride

Sullivan has proved strong enough for surgery! It is scheduled for 9am Friday morning. He is now on a conventional ventilator instead of the high frequency one and is going well but they re intubated him with a different tube because it was leaky...never a dull moment. I waited outside while they changed tubes because I get too nervous listening to the beeps of the various monitors alarming as they do stuff. I hope Sully doesn't get into skateboarding, downhill sports, or anything else dangerous that I will have to watch. Given he is the offspring of Neil and I what are our chances?

I am excited and nervous about his surgery tomorrow I can't ever remember feeling the way I do right now. I can't describe it but I think it is one of those special parent feelings. We are a step closer to him becoming well but need to go through more scary moments before we arrive on the other side. Everyone describes CDH as a rollarcoaster --I read all about it and heard it from other parents when I was pregnant. I thought they just meant up and downs like bad and good days or moments and didn't really get the emotion that goes with it. It is the exhilaration, excitement, terror all wrapped together that I couldn't fathom until I got on the ride myself.

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Wednesday, January 26, 2011

Happy Australia Day!

Sullivan is making some progress in the right direction. X rays show some lung growth. The plan for the day was to reduce his edema and the swelling around his eyes was reduced enough for him to open them! Neil said it was like meeting him for the first time. You can see his pillow is a hot/cold gel pack. It is just room temp but the nurses put it under his head to reduce pressure sores. He is still to fragile to move around so they make subtle changes and he is awake enough to cough, hold your hand, and take the occasional breath on his own.

Tuesday, January 25, 2011

Free at last

I was finally discharged after exactly 8 weeks of hospitalization. It was worth every moment for my little man. I am going to frame our name bands together. For now, Neil and I are sleeping in the overnight room of the pediatric intensive care unit. My anxiety goes up in a linear relationship to my proximity to my bub. I love being able to wake up and visit him in the middle of the night.

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Sunday, January 23, 2011


Sully at 5 days looking a bit less swollen. He has been moved onto his belly now which will hopefully help his lungs a bit. Sully is on maximum support and we are all waiting to see if he will improve. He is on slightly less sedation so he can cough (good for lungs) and tries to open his eyes (good to see Mummy). Neil and I are trying not to get too exhausted. It has been the hardest weekend of our life. We thought we would be saying good bye to Sully on Friday but it is Sunday and we are all still here. I am reading him lots of Pooh and trashy magazines in a cheerful voice. He also gets sponge baths and I put lip gloss on him (it is lubricating jelly but I tell him it's gloss).

We stare at monitor a lot, willing some numbers to go up and some to go down. We stare at him a lot too xxT

Friday, January 21, 2011

Midnight visits and winnie the pooh

A quick note to say thanks for all the texts, e-mails, cards-they really lift our spirits. I am recovering well from the section though I am admittedly not resting as much as I probably should.

It has been a rough night as Sully has taken a turn for the worse. Neil and I spent most of the night with him and he has picked up a bit. Not sure if it is the reading of Winnie the Pooh or the medicine, but Sully certainly is a tough little bunny.

Tuesday, January 18, 2011

Our chubby cherub

Sullivan Josef Ross has arrived! 3.08kgs! He is going well in ICU on ventilation at the moment and has peed on the nurses 3 times. xx Tara

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Monday, January 17, 2011

1 more sleep

Our Capricorn baby will arrive tomorrow! I am hoping he is a very stubborn little goat who hangs in there and gives a good fight. The caesarean is scheduled for 1p! Thanks for all your emails, phone calls and texts. I feel very lucky to have so many caring and supportive people in my life.

Our pediatric surgeon asked me last week if I would "do it all again" and at the time I thought she meant get pregnant again and I was like "oh I don't know"...ha what woman at 37 weeks pregnant wants to be pregnant ever again? Especially someone who has had a 42 week belly since she was 29 weeks pregnant!

I realized after she left that she meant our decision to go ahead with the pregnancy knowing that the baby may not survive. I won't lie and say that it has been easy but I can say that I have no regrets. We wanted to give him the opportunity to live and that's exactly what he will receive tomorrow. I have done my very best to be positive, enjoy the pregnancy, and love him with all my heart. It has been a challenging mental and emotional battle. I have made a story book for the baby documenting life before him and the pregnancy and hope to tell him of his awesome recovery. I am well aware that I could also write about his passing on. It is surreal. Time has moved slowly.

Now we are entering a different phase...time will pass more slowly and there will be a lot of ups and downs as we just take each day at a time. And more waiting. I have decided that whenever I am getting really worried in the next few days, weeks, months, I am just going to remind myself that he is alive right now. That simple thought has helped me get through the last few weeks of my pregnancy and has pulled me through the bad days. I will let you know if it keeps working.

Neil and I feel ready and very excited to meet our little baby and will cherish whatever amount of time we have with him.

Saturday, January 15, 2011

date night

Neil and I went out for dinner just down the street from the hospital. I couldn't believe how big the serving size was compared to the hospital diabetic diet size! Mmmm it was Lemmon Pepper Calamari definitely not on the hospital menu.

I got some well intended although rather inappropriate words of wisdom from a senior midwife as I was leaving the ward -- on the subject of keeping the "allure" in my marriage after child birth. I don't think I have ever heard the word allure used in a sentence before. The word lover was also used which made me want to cover my ears and sing a song. The sermon was all about keeping the allure so Neil wouldn't get a wandering eye (because that's what happens and so many people divorce after child birth). So we both needed to keep reinventing ourselves, more specifically I should DEMAND that my husband reinvents himself for me because she has been married for 27 years and that's what she does. (I wanted to ask if he comes home wearing various costumes or ??? but I smartly bit my tongue as who knows what she could do to me with full access to the drug cupboard). The funniest part was she did this in front of a student midwife who could barely contain herself from laughing. And honestly, aren't I kind of a vulnerable patient? What if I was feeling insecure? Anyway Neil and I had a good laugh, mostly about the repeated use of the word allure. And to hysterically laugh with your partner is admittedly...alluring. So yes she is right maintaining date night is very important.

Wednesday, January 12, 2011

hospital corners

Passing the time by making my bed really slowly. Tip for the ultimate in hospital bed comfort: use a blanket under bottom sheet as a mattress protector so you can't feel the plastic mattress.

Monday, January 10, 2011

Watch it kid, that's sharp!

I had an urgent amnioreduction on Thursday. My doctor looked at my ultrasound results from Wednesday and my Amniotic Fluid Index was 44. Normal is less than 18, which is probably 600-800ml of fluid. I have probably have about 5 litres...The fluid came back surprisingly fast this time. Though they never take all the excess fluid out usually 1 - 2 litres a week.

The first pic shows the needle going in, but with a much smaller baby. The second photo is not me but I grabbed it off the net because it shows how huge the needle is. I receive a local anesthetic first! You can also see the that one doctor handles the needle and the other monitors the baby's position with the ultrasound.

The doctor puts the needle in away from the head, where there are no baby parts. Our baby is much bigger than the baby in the diagram and can open his eyes. Admittedly he is a curious fellow and has tried to grab the needed each reduction I have had and the doctors skillfully move it away or pull it out. This time however, the doctors let him hang on to it because he was being such a pest. Hanging on wasn't enough, though, and suddenly he grabbed it with both hands. I said to the doctors that he will try and put it in his mouth next. {Chuckle}, Tara, don't worry that doesn't happen. 5 secs pass and sure enough the monkey is making a move to pull the needle into his mouth. The doctor (obviously) pulled back the needle, a bit stunned. Needless to say, this reduction hurt more than normal because there was a tug o' war going on in my womb. Baby grabbing and doctor pulling back. The reduction didn't last that much longer because we didn't want him to poke himself in the eye. Seem likes a kid that we will not be able to leave alone for a second or he will be on the roof!

It took me a bit longer to recover from this reduction, I had more painful contractions after and got loaded up on medication, got very tired, and felt iky. So I slept all day Friday, half of Saturday and started to come around on Sunday. Finally feel more myself today, Monday.

36 weeks!

Tuesday, January 4, 2011

paper towel antenatal class

The hospital midwives have been great about providing me with lots of info about labour since we missed our antenatal classes. One of the Maternal Fetal Medicine midwives spontaneously starting telling me about the stages of labour by drawing on a paper towel. Interestingly, the first pic is of my contractions (bottom graph) after the last reduction. Don't worry they didn't hurt - happy face! I took some medication, then the graph flattened out as my uterus relaxed.

Saturday, January 1, 2011

Happy New Year

Very happy to have made it to 2011 still pregnant! We are 35 weeks on Monday which is amazing considering we were facing the prospect of having a 30 weeker with CDH...I had what may be my last or second last amnioreduction on Thursday and was moved back down to the Antenatal ward today AND got another visit from Bluey so 2011 has been great so far.

Neil and I started to try and figure out names...we have a first one picked but are struggling with a middle name. It would really help if we weren't totally distracted by all the horrible names in the baby name book. For example: Wrangler (American) a form of Rangle. Pony (Scottish) a small horse. Anabal (Phoenician) a form of Hannibal. And why is there even a U section? What do you think of Ulf?